A Father’s Day Celebration: Members Only

Lou is a married father of three children. His oldest daughter was diagnosed as having Autism Spectrum Disorder at the age of 4. You can read the original post here.

For this post, I would like to pay tribute and thank all the fathers out there that love their autistic children unconditionally. This is for the dads that have what it takes to be a real man and stand by your family and take your vows seriously. This is for the dads that don’t run from their child being different, and for those that may just now be coming to the realization that they are entering a club that they had no plans on joining.

For many in a marriage, an autism diagnosis can be placed in the “worse” column of “for better or for worse”, but with patience and communication you can survive. Don’t bottle up your fears. Tell your wife, your friends, or share them with others in a blog and you will free yourself of the many burdens you are trying to shoulder and find strength in numbers.

You know that you are the father of an autistic child when:

You know exactly what your child is saying even though she has never said it… EVER.

You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.

You have ever worn more of your child’s food then he has eaten, and he is 6.

You have ever tried “stimming” just to see what it is all about.

Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.

You see a kid being a complete terror at the grocery store and you do not judge.

You have been punched in the face by your child and instead of getting angry, you laugh it off.

Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.

You have eaten a family dinner in the dark on several occasions.

You have shared belly laughs with a child that you have no reason as to why they are laughing.

You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.

Related

As if it were not enough to heap blame upon mothers of children with autism, now some folks are piling onto fathers, apparently because they are insufficiently engaged in the lives of their children. A new documentary, Autistic Like Me: A Father’s Perspective, chronicles the journey of fathers who have children with ASD. The goal of the film is to get fathers to open up and become more engaged with their children. Although I understand the sentiment, and some men may go through the process of coming to terms with being the father of a child with autism differently than some mothers, I’d like to suggest that a critique of inadequate “engagement” may be somewhat lacking in understanding and fairness. Most fathers are so busy busting their hump trying to bring in enough money to pay for the crushingly expensive cost of autism treatment, and working overtime to be effective advocates in fighting for their children’s rights, that their energy is completely spent by the time they come home each evening.

Research indicates that often it is the mother who is the first to either work fewer hours or leave her career all together in order to take care of the child with autism. Consequently, there is often only one income remaining to support the family. One needs to remember that when there is a child with autism in the home, life can become a chronic crisis (yes, there is such a thing). Parents’ sleep is often radically disrupted — for years! — yet society still expects parents of children with autism to perform normally at work every day and function optimally like everyone else.

They don’t sell Superman Pills at the local supermarket!

The last thing for which many fathers of children with autism have energy, is to “interact,” particularly with a child who does not naturally interact back with them. Where autism is concerned, the deep dysfunction of the domicile is no small matter; professionals should be content that the family unit remains functioning and intact! In its proper context, the notion of insufficient “engagement” on the part of the father is thoroughly trivial. Moreover, let’s not confuse cause with effect i.e., does a child with autism improve when a father becomes more engaged, or will a father become more engaged when a child’s autism starts to improve with effective, science-based treatment!

Here’s a proposed recipe for the film makers to help fathers come to terms with having a child with autism:

1) Show fathers the way to get their child access to a high quality, early intensive behavioral treatment program
2) Demonstrate the progress the child makes in an effective treatment program.
3) Provide the father with behavioral techniques required to allow them to engage meaningfully with their children
4) Tell them to go out there and bring home lots of money, since that is going to ultimately help their child get what’s required for health and well-being
5) Suggest that dad arrange a weekly night out for dinner alone with mom, where autism will be strictly forbidden as a topic of conversation
6) Advise them not to inherit tomorrow’s problems, since we do not know the child’s future until their full potential is realized
7) Get them involved with groups that advocate for the rights of their child. They will be able to work towards fixing the issue with the right group and, if necessary, the right lawyer.

It’s remarkable how easy it is for a father to come to terms with a child’s autism when the child is in an effective treatment program and he sees significant results! Let’s get more engagement with that idea.

I was not around on the website when this first appeared, but am grateful that you re-posted it. I have read several things written by several people but yours always make me smile and feel like not only that I know you but that you know me, and with this title you know my husband. You have done a wonderful thing by voicing this as well as so much more for myself and other parents who are slowly finding their way in a world they knew nothing about. This touched my heart and made me smile with a tear. Thank you for being a voice and telling the truth even when sometimes that can be so hard. I look forward to reading more of your posts as well as take a friends advice and try a few blogs of my own, if for nothing more than to just get it off my chest. Thanks:)

Lou-you are such an inspiration to me. My son has just turned three years old and was diagnosed 6 months ago with pdd-nos. He is the most beautiful, happy, funny little boy. He is the reason I was put on this earth and will fight everyday to help him achieve his highest potential. He has repetitive hand movements,limited speech and immature play skills at this point. He has been in a 1/2 day program since September and will be moving into the full day program in a few weeks after discussing with his teachers the fact that I think 2 1/2 hrs a day is not enough. Everyone agreed he would benefit. He gets speech 4x weekly and OT 2x weekly. In addition to that I pay for private sensory therapy at a Sensory gym 2x weekly. He is progressing at a slow rate but never the less we are moving in the right direction. I am struggling everyday with my own personal worries about the future. I am most often anxiety ridden worrying about what my son will be like ten or 15 years from now. Wondering if he will ever talk, have friends , ride a bike, drive a car, etc. Sometimes I’m not sure if I should have more children because I worry.
I try to remind myself about living each day as it comes- and most days are awesome. I have to relax but don’t know how.

When our autistic son was about 8 years old, and we were all at the dinner table…he was flipping his hands (his fingers as limp as spaghetti), and giggling wildly. Somehow, it looked to be SO wonderful to him, that we all put our forks down and began to flip our hands too…letting our fingers go as limp as possible. Somehow, we didn’t have the finesse that he did, nor did it gives us the same thrill…but HE enjoyed seeing us do it too, and we could tell by the look on his face that he was glad we had finally joined “his world!” If anyone had looked in our window at that point, they would probably have taken us all away in “the little white wagon”…but we remember it now as a “fun” interlude…where we were all of one accord! See other instances of dealing with autism on autism45.wordpress.com Carole Norman Scott

I loved this post! I have to admit that I have tried flicking my fingers infront of my eyes to see what is so exciting about it. A few times I’ll do it when John is doing it and he will stop and laugh:). I am still reading about all
Of your experiences with Ben. It is truly amazing how strong you are and what a great mother you are. I’m so glad that you reached out to me. I feel stronger each time I read another section. Thank you.

I would like to make just one more comment…that is…to thank my husband, who has been the father of an autistic son now for 49 years. He has stuck with me through it all… diagnosis back in the 1960’s, the “mama & daddy did it” theory, finding schooling, and driving 4 hours each way to bring our son home for visits when it became necessary to find him a “home away from home!” He has been the sole “breadwinner” all through the years so that I could “be available,” helped in every way he could, and is still with me after almost 54 years of marriage. Also, I’d like to commend our other children, who have “hung in there” and who love their brother, even though it has been an “interesting ride” for them, and not always an easy one. I agree with ALL that has been said, and appreciate your website VERY much! God bless you! Carole Norman Scott autism45.wordpress.com

You make many points of which I am in total agreement. Your recipe for helping fathers come to terms with an ASD diagnosis has many good ingredients. However, you say some things that quite frankly as a man I find a bit stereotypical and sexist.

It is an old school mentality to believe that fathers should be the hunter/gatherers bringing home the bacon and be able to use that as an excuse to check out. Now I am not suggesting that you are saying that fathers be totally uninvolved, but I do think you are selling men short and giving them an out clause.

Engagement by a father in the home is VITAL. I am not saying this to toot my own horn, I do not think I am any different than any other guy, but my schedule is hectic. I have the good fortune of working my full-time job on a 4 day work week schedule. I keep late hours on my work days, and my off days are in the middle of the week. On my off days, I try to get whatever freelance work I can get. Sometimes I work all three of my off days. Despite my schedule I make a point, a habit; in fact I consider it MANDATORY to have time with my kids. Not just my child on the spectrum, but my two neuro-typical children as well. I do this on a daily basis with little to no sleep. I am usually the one that stays up with Bianca when her sleeping pattern becomes disturbed. I am the one that takes her to therapy twice a week. I also volunteer to help out at her school during recess one day a week so I can spend more time with her and other kids with special needs… I can’t imagine ever once using the “I put the food on the table” excuse. Fathers that do that should be ashamed of themselves.

I have never seen a study on the subject, but I would guess that kids in general (ASD or not) thrive when both parents are actively engaged with the life of their children. What do I mean by actively engaged? I mean that the father must be accepting of the child’s condition and what it means to not only the child, but the family dynamic. He MUST be participatory and included in the treatment plan. He must play with and develop a deep meaningful understanding and relationship with the child.

Unfortunately money is a necessary evil in terms of treatment and care and earning it takes time away from the family, but there is way more to being a dad than bringing home a check. In my opinion it is the least rewarding thing I do.

What you see as piling on to fathers, I see as a necessary call to action. I cannot tell you the number of functions that I attend in which I am THE ONLY DAD there. It is sad. One of the groups my family is involved with they consider me one of the “moms”.

I do all this while still being able to function as a man. I am a sports nut, I play video games, I do all the lawn care, I go out for beers and other “manly” activities with my boys. I am secure in my manhood, yet still understand the importance of being a loving, caring, nurturing father who not only brings home a paycheck, but lots of hugs and kisses as well.

Is my house crazy? Sure. Are there times when the stress meter needle is pinned at 10? Absolutely. Do I get enough sleep? Not by a long shot. But for what you seem to suggest men need Superman pills for… I call Tuesday.